Hospice care

[Lazarus11]

Looking for info…anyone have experience with hospice? It was designed to last 6 months but what if you live longer than that? A year or even more?
I am gathering information and they are coming today to meet John….anything Ishould ask? The goal s to keep John home.
thanks

[agate]

So good to hear from you, LInda. I know of people who have left hospice care and gone on to live quite a while. I'm not sure but my impression is that you can stay on for a longer time in hospice or you can leave, depending on circumstances.

Hospice has come for several people in the building I live in. I was relieved when I found out that hospice can come to the home--the person doesn't need to go to some other setting.

Policies may vary from state to state, and from agency to agency, but one or both of my brothers in CA had hospice coming to the home, and it's been that way several times that I know of here in OR.

EDITED TO ADD:

I'll mention this article but hope it won't scare you. It's about some of the pitfalls and abuses of the current US hospice system. I hope you won't be up against a paywall and will be able to read the article. If you can't, I might be able to copy and paste some parts of it. Just let me know. I don't want to frighten you--but you do want to proceed with caution, I think.

"How Hospice Became a For-Profit Hustle" (New Yorker, November 28, 1922):

Only registered and activated users can see links., Click Here To Register...

[Virginia]

Linda, I am so sorry things have come this far. My knowledge of hospice is limited. I had a neighbor who was sick but able to be up and around. She said she had a kidney disease. However, she occasionally drove her car to the grocery store and went for hair appointments and things like that.

One day she called and said she had been placed in hospice care. When I would ask her a question about it she would say she didn't know because her two sons had talked to the people who came to her house and she just stayed out of the room. The two sons both lived in other cities and were not around much at all. Then a couple of months later she called and said they (meaning hospice) wanted her to go into what is known as hospice house. She told me it was for respite. I asked who needed the rest and she said the caregivers. The different caregivers came only about twice a week for a few hours.

She put them off, but they finally talked her into going a few weeks later. She called me while she was there. I asked about what was going on and she said "When I get home I will tell you everything you need to know about hospice". Before I even knew she was home, she again called and said she had come home for a couple of hours, thinking she would be staying. She undressed and had on only her panties. She was hanging her clothes up and turned around and when she did she got dizzy and started vomiting. She crawled to where her phone was and pulled it down and called 911. They came and took her to the hospital. She had to lay there on a stretcher until hospice people picked her up and took her back to hospice house. The hospital could not keep her once they found out she was a hospice patient.

She called one more time and told me when she was due to come home. I called her at home and she answered. She started to get up out of the bed while we were talking. She just wanted to take a few steps. Some lady told her in a very stern and not kind voice to get back in bed and not to get up again. I heard the phone drop. The next I heard from someone (within a few days) she was back in hospice. Within another couple of days she died.

My former husband who I was divorced from was put in hospice. He had been sick for about two years, but was still up and walking around the house with a walker. His daughter took a lady from hospice to see him and he told me she seemed very nice and everything appeared to be alright. He hired his own helpers. They came every day for eight hours and he stayed alone at night. When he died I talked to his son who said he and his sister had talked him into going into a hospice house in the city they lived in. He said his Dad did not want to go. He said it had been a long two years and then after going in he died in 5 days. He didn't have anything good or bad to say about hospice.

I expect none of this applies to your situation because you will be there to see what is or isn't done for John. I have had a couple of people tell me they had a good experience with hospice when dealing with elder relatives, but they were always around to take care of things.

[Lazarus11]

Thanks. Good info. What we learned today is that when you enter hospice you no longer see your own doctors. John got upset with that.his doctors have not been able to help him but he s not ready to give up control although once you ar accepted into hospice you can be released if you improve and go back on if you slip.
I

[agate]

I think Cat Dancer had hospice but don't recall for sure. I could ask Tom Cat (Ralph) what he remembers about it if you like. Since he's not been well himself lately, I'm not sure I'll get a reply soon but it's worth a try.

It might help if I could tell him that it's about your husband, Linda, but if you don't want me sharing that, that's fine too. I'm pretty sure Tom Cat knows who you are as you've replied to his messages.

[Lazarus11]

Thanks agate. No problem using my name. I appreciate your friendship!

[jingle]

My sister lives in a nursing home. She had hoped for more and better care after being put in hospice but it has not changed very much.

[Lazarus11]

Thank you Jiingle. Perhaps it was the article Agate posed but II read enough to realize hospice might not what it was…John is getting lots of visiting nuss and therapists now so we will put hospice on hold

[agate]

For Linda from Tom Cat (Ralph) (sent Sunday evening):

Hi. Let Lazarus know I will be getting back to her. There is two different approaches to this. There is palliative and hospice.

[agate]

More from Tom Cat/Ralph, sent this morning:

Palliative care may last for a year or more, while hospice usually only takes over in the final months. I think both have in-home care as well as institutional care. In both cases they would become your health providers, and your doctors of the past would no longer work with you. Exceptions are some specialist you may still need.

If you're going to be hanging around for months, I think you need palliative care, but if you're fast on the way out hospice may be your choice. Some hospitals offer both services. Some offer only in-home care, and how much Medicare gives you I'm not sure. You need to check this out with people you know in the area.

Also states may have extra outlays too. In Wisconsin there is Badger Care for rural areas where farm incomes are lower than in town, and they are trying to maintain farms.

I wish you the best, Lazarus. It's really rough when you have to pull the plug on our companion after all the years. You wonder if there wasn't something else you could do. I was able to keep Ann at home until the last week. She wasn't able to communicate at all when I took her in to the hospital. She responded to no meds at all. When I let them turn the life machines off, she still hung in for a few days. But she just stared at the ceiling. It was peaceful in the end, but very, very lonely since.

I wish you the best. I hope you can manage your farm for a bit longer. I hate seeing rural land turned into suburbs. My deepest thoughts go with you. If you had children, I hope they spend some time with you now.

I hope these words from me may help. I'm not the director that Ann was, with deep thoughts and bits of wisdom for all occasions. My virtual hugs go out to you. Tom Cat/ ralph

[Lazarus11]

Thanks for the post